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BY EMILY ROUSH-BOBOLZ, STAFF WRITER

When a pandemic hit the United States in early 2020, no one knew what to expect. Schools and businesses began to close, and people were being laid off from their jobs, but it wasn鈥檛 yet clear how the bleeding disorders community would be directly impacted. It was clear, however, that Hemophilia Federation of America would continue its mission to educate, assist and advocate for the community throughout the unforeseen crisis.

HFA immediately responded by developing a hub of information on its website to provide up-to-date information on product availability, COVID-19 information specific to bleeding disorders, and resources for health insurance and assistance for those who found themselves in a difficult situation.

But as COVID-19 further threatened the livelihood of bleeding disorders families across the U.S. with job loss and mandated shutdowns, the need for a national resource to apply for and receive emergency financial assistance became immediately necessary. In response, HFA created the COVID-19 Relief Fund within its Helping Hands program.

Individuals, families and industry partners who found themselves safe from the ravages of the pandemic stepped up and donated hundreds of thousands of dollars and continue to do so. Thanks to those donations, since the COVID-19 fund was established, HFA has helped more than 350 families with more than $230,000 in relief. Relief has been for housing assistance, utilities and transportation to help the families who have had trouble making a mortgage or rent payment while laid off or covering transportation expenses to get to HTC visits.

Lending a Helping Hand

Wendy*, 29, of California has a rare factor 13 deficiency. In early 2020 she was placed on furlough due to COVID-19 concerns. After some time on furlough, her employer asked her to return to work, but anxiety and concerns that it was too soon to return to the workplace plagued her. Her employer demanded her return to work first thing on the following Monday morning, but with the family childcare provider closed on quarantine and her husband an essential worker, unable to take time off, Wendy was forced to resign.

鈥淚 felt robbed from my job,鈥 she said. 鈥淭here was no choice but to resign. It’s been a tough road to make decisions so fast because of this pandemic.鈥

In April, a member of her family began to experience symptoms of coronavirus 鈥 severe headaches, body shakes, high temperature and extreme fatigue. An emergency room visit led to a diagnosis of coronavirus with pneumonia, followed by a five-night stay in the hospital. Medical bills topped $17,000. Insurance helped with the medical bills, but the family still had difficulty making the mortgage payment. HFA鈥檚 COVID-19 Relief Fund was able to help.

鈥淚t meant a lot to have the team at HFA find ways to lessen the stress for some people dealing with money issues,鈥 said聽Wendy. 鈥淚 also received a gift card for $200 for groceries, which was an amazing thing since we were all out of jobs. It’s amazing when we all work together.鈥

To have the bleeding disorders community pull together in times of need is nothing new. In 2017, when hurricanes, tornadoes and other natural disasters hit the U.S. mainland and Puerto Rico, HFA worked quickly to establish the Together We Care fund. The fund was also maintained using the Helping Hands infrastructure, and again numerous donations from the community and partnerships with numerous bleeding disorders organizations allowed HFA to distribute a significant amount to those impacted by the natural disasters. At that time donations went toward replacing roofs, purchasing generators and helping with transportation to HTC visits.

For the families in 2017 and now for families impacted by the pandemic, like Wendy鈥檚 family, Helping Hands and funds like Together We Care and the COVID-19 Fund bring a little peace of mind.

鈥淚t truly means so much having this resource during a time where none of us were prepared,鈥 she said. 鈥淚t helps us worry less when bills are paid.鈥

*Name changed for privacy purposes.

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